Tag: Deaf and hard of hearing

Meeting Your Tribe

Couple weeks ago was the Annual Say What Club Convention.  This yes is an annual event but it is my first time attending.  I should back up, The Say What Club is an online group where everyone has a hearing loss or their life is affected by hearing loss by a spouse or a close family member.  I have been a member for 6 years maybe?

A couple years ago there was an email to try and pitch and sell us your city and we will hold the 2018 convention there.  I wrote a proposal for St Paul.  Now Benson is where I live now but we don’t have an airport, heck we don’t have a Wal-mart for 40 miles.  St Paul had everything we needed and it was right next door to my hometown so easy access to family (watching our kids).  This past year has been busy, stressful, exciting and a growing experience helping plan a convention for people coming from all over the USA.

Attending an event like this was really, really hard for me.  I knew a couple of these people in person.  A large amount of them I knew from Facebook and email.  That didn’t help the fact I have social anxiety and I thank God that Chad was willing to come with me.  Be my anchor, be the one that I could go back to if need be.  First meeting was a meeting where we assembled bags to give to each person and talk about the convention, loose ends and such.  It was great.  I left that meeting with a huge smile.  This is what we planned a year for.  This was my tribe.  They understand hearing loss because they live with it everyday.  It is amazing the ease of a meeting when some listen, some lip read, and combinations in between.  The next day we met and a group of us walked to Tin Whiskers.  It is a small brewery that was just a couple blocks from our hotel.  Chad and I have always enjoyed a brewery tour and have done many through our years together.  I am not a beer drinker but enjoy it.  It was a fun outing that was an easy way to meet some people, talk one on one with some people and meet some new people.

Wednesday night our welcome party. We had a theme as every good party should have, a speakeasy, a roaring 20’s, a Great Gatsby theme. It was fun. We had feathers in our hair, pearls, some had long gloves a few men donned a fedora. We had welcome prizes, MN themed food. We had cheese curds, deviled eggs, wild rice sliders. Something for everyone. It was a time to meet lots of people. A time to meet wonderful friends who you have felt you knew for years but meeting in person for the very first time.

After this welcome party I knew I was hooked. Everyone was just so nice. It really was like meeting long lost family. Thursday was a great day, they were all great days. A dynamic speaker, visiting with the vendors and putting our bids on the silent auction items. Our last workshop of the morning was visiting Starkey Labs and getting a tour. Once our bus got to the CORRECT hotel we were off. A little late but you just role with it. We had a great tour, a lunch we ate in the bus since our bus was late to start with and then a tour of St Paul.

Friday- what a fun day. We had great workshops from clear speech to an artist, which I found fascinating. To the last workshop of the morning and that was mine. My workshop was titled, “Designed to Stand Out” I talked a little about my idea showed some pictures of examples and then let creativity take over. I had been gathering supplies for near a year. I had jewels, washi tape, nail wraps and tube wraps. It was fun.

Friday afternoon was a St Paul Gangster Tour. I think this was a highlight for Chad. We toured all over St Paul and saw so many sights.

House was home to the famous Ma Barker and the Barker Gang

This is the South St Paul post office the Barker Gang held up for the cash that came for paydays.

John Dillinger lived here and had a shoot out with the FBI in the stairwell. I wonder if current residents know the story.

At Swede Hallow Hearing the story of the Hamm kidnapping.

We even passed where F Scott Fitzgerald lived and wrote his first novel.

It had been a very full day but we weren’t done. We went to the St Paul Saints game. My parents joined us and brought the kids. That was fun and special. To bad the weather had to interrupt.

Saturday was the end. We had a banquet and keynote speaker. There were lots of hugs and pictures taken. Greta joined us for this last event. I wish the night never ended.

If you read through this whole blog- bless you. I really just wanted to stress the importance of finding your tribe. Find people that can understand, they get it. I got back to my moms on Saturday night and I just cried. I couldn’t stop myself. I wish I could live around all these people all the time. Chad and I agree this was just a fun week, one we will never forget.

*I need to give a shout out to Andre Binns who took fabulous pictures throughout the convention. Many of them are featured in this blog.

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A Mother’s Worry

My son and his ears… these two things bring me worry and concern. My son has a fluctuating conductive loss and it is frustrating beyond belief. Henry is 9 years old and this has been ongoing since he was 2. So 7 years of doctors, ENT’s and our audiologist. My son loves going to the audiologist and he does about 3 plus times a year. 

Let me go way back. Henry didn’t talk when he was a toddler. He also didn’t babble. He was quiet and reserved. I started getting concerned he didn’t talk and the doctor jingled his keys and Henry turned so I was told, “He can hear but maybe speech therapy would be good”. Henry started speech therapy at 2.5. I still wasn’t convinced he could hear well but was told not to worry. I had tons of ear issues as a child and it turned into a moderate severe hearing loss so I was no dummy on this subject. I also happen to have a B.S. in Communicative Disorders so I have taken many audiology classes so pretty well versed. Finally a public nurse in our small town said to me, “your son can’t hear”. She referred us to an educational audiologist and sure enough a conductive loss. Tubes were put in and his tongue was also clipped at that time. Glue ear was discovered and his ears were cleaned out. His hearing did improve but it is this roller coaster we are riding. 

A few years ago we noticed Henry was saying what all the time. Took him back in and the cycle continued. His hearing has dropped to a moderate loss. This time T tubes were recommended. These are a long term tube that are surgically removed when done. They don’t fall out and can cause a lot of damage so we really had to weigh the pros and the cons. This worked well for about 3 years. 

Fast forward to a few weeks ago. Henry’s hearing has now dropped to a moderate loss again with the T tubes in. This loss is comparable to having foam earplugs in your ears all day. This was concerning and I could tell the audiologist was much more concerned this time and something had to be done and quickly. We saw the ENT and it was decided surgery would be done the following week. Henry had the old T tubes removed his middle ear scrapped out and new T tubes inserted. It was a simple and quick surgery. He was put under so there is still that risk of surgery. As simple as it is I have to admit I cried when he was taken back. Everything went well,and now we wait and heal. We will find out in a couple weeks if his hearing has improved and how much.


It is really hard for me to see my son go through this. I know there are much bigger trials in life but to him these are big. He comes home from school exhausted. Have you heard of listening fatigue? It is real and it is tough. Trying to hear and make since of conversation all day is taxing on the brain. He comes home crabby many days and I get the brunt of his frustrations. He loves school but it is hard and exhausting. 

Now if Henry was found with a sensorineural hearing loss he would be given hearing aids and we could learn to deal and go on from there but instead I feel we are on this hamster wheel that just never seems to end. I pray that his hearing improved with these new T tubes but if not I would love to go to the next step and address the issue and go on. 

I am a mother with hearing loss. I feel I can help him with these issues but I also know what it is like. I hate that he may have some of these feelings I have had. I have felt embarrassed, left out, not fitting in. I sure hope I can help him through these things. 

School conferences were last week and we heard he needs to learn to self advocate for himself with his hearing. That is so hard to learn but will try to teach him every step of the way. 

A mom can worry and there are always things that can worry you. This is just one thing that consumes my mind, but I am also consumed with pride for both of my children. They are kind, creative and loving. They are my heart. 

Super Bowl 2017

Super Bowl in America is like an unofficial holiday.  Snack food is on display at all the stores.  People are asking you who are you cheering for this year.  Parties are held, bars are full and friends and families get together.

A few weeks ago I told my husband I wanted to host a party this year.  We used to attend a yearly party with friends.  I have great memories of those parties.  Kids playing, food galore, guys watching the game, and lots of laughter.  He agreed to the party and I got started trying to organize my small soiree.  I decided to make a turkey and we would have shredded turkey sandwiches.  Other food would be brought so I wanted the main dish type food covered.  We cleaned the house, made sure we had enough seats, made the food, and got excited.

I am not a football fan.  I will watch a game more often now in my life since my husband and son are interested in it.  My son is 8 and he is going to play for the Seattle Seahawks some day.  Just giving everyone fair warning we may may have to brag a lot when that happens.

There was something different this year than going to other get together’s or parties.  It was hosted at my home.  A person with hearing loss can have great anxiety when with a group of people.  I used to think this was unique to me but after finding my tribe I have learned I am not alone on this topic.  I enjoy socializing with people but that first step out the door going to a social event terrifies me.  If it is a home party, a meeting, or even church I feel like I could be physically ill.  Knowing when I am in a group of people my hearing for comprehension drops like a rock.  I try to answer the most obvious questions but that can often be wrong.  I think they asked, “How are you?” I answer, ” I am great how are you doing?” they do a little laugh and then re-say their question which was not what I answered at all.  I feel my cheeks burn and I am embarrassed and feel stupid.  I probably shouldn’t feel these emotions but I do.  I am human and that is what I feel.  Being in a group of people, like a Super Bowl party there is laughing, kids yelling, TV is on, a few different conversations going on.  It is darn hard to focus on one conversation and follow.  Saying all this I had a great time last night.  We had enough food I could have fed the whole block.  We had a great turnout.  We were missing a few due to illness, darn germs.  There were a few times I just checked out.  I faced the TV and watched the game and was amazed how into the game I got.  It was a nail-bitter that is for sure.  I was able to escape to my kitchen, or my room for just a few minutes if needed.  The Lundquist 1st Annual Super Bowl Party I believe was a success.  I hope our guests equally enjoyed the company of friends and fellowship.  Next year is already on my calendar.  It will be a big deal next year as it is held in Minneapolis.  I am excited and so relieved that the night went well.

I was cheering for the Falcons but it was a good game and it held your attention until the bitter end.  Football, Food, Friends, and some funny commercials was a great end to the weekend.

A Burden

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I have a woman’s name that is lying heavy on my heart.  I just learned about this woman yesterday.  It consumed my thoughts all day.  Let me back up and I will explain.

I arrived at work yesterday.  I am a personal care attendant in a private home.  Dr Phil was on the TV when I arrived.  I have never been a huge Dr Phil fan but I watch it and more often than not I can get pulled into the episode.  Dr Phil had a guest Bethany Storro, a woman who survived having acid thrown into her face.  What makes this shocking is Bethany did this to herself.  A failed suicide that had to be accompanied by horrible pain.  When she realized she wasn’t going to die, and made a huge personal mistake, she said she was attacked.  She said someone did this to her, a big mistake.  She didn’t point out a certain person but she gave a description.  She later retracted her statement and took the blame for the act.  She was charged and went to court were fines and time were given to her.  This is where the story ends in the newspapers.  I researched more on Bethany yesterday and what I read was horrible.  She was told to die in these articles.  She was called dumb, idiotic, ugly and deserved to die.  When did common human decency go out the window.

That was the back story, now why this is lying on my heart.  Bethany had a speech impediment. I could hear it and thought maybe acid near her mouth might have caused this.  Dr Phil did more questions and was very kind with Bethany.  It then was brought out.  Bethany is hard of hearing.  She has a deaf accent.  She poured her soul out with Dr Phil that because of her lack of hearing she has always felt like a burden.  This brought instant tears to my eyes.  She felt like a burden for her lack of hearing.  This ripped at my heart.  How was she raised? Did she have parents that advocated for her? Did she have a mentor to show her that life can be good? All these questions swirled in my mind.

I work as a deaf/hard of hearing role model with Lifetrack in Minnesota.  It is a new groundbreaking program that pairs a family that just got a diagnosis of hearing loss for their precious child with an adult who has hearing loss.  They can learn and see that this isn’t a dark road they have to walk alone.  These kids can do anything.  These children can grab the brass ring like any other child their age.  Deaf and Hard of Hearing kids are not a burden because they can’t hear.  I have attended many Hands and Voices events and I see children that are full of life and energy and promise not a burden.  These children are tought to self advocate.  A very hard skill to learn for anyone but they are learning it young.  Skills that will take them far.  I have learned so much from these young children to young adults, they are remarkable.

Bethany of course has mental illness on top of her hearing loss but I just sense it all was a cumulative effect from her hearing and her speech.  Did she learn to self advocate, did she have adults that advocated for her as a child?  I look into my own life again with a son that has an IEP (Individual Education Plan).  He has had an IEP since age 3 and we know he will have one for sure for the next 3 years to 5th grade.  We have tried to do the best for him.  He doesn’t have huge issues but every smaller hurdle he has we have been there with him.  From a fluctuating hearing loss, to being on the Autism spectrum, to learning disabilities.  We are helping him and trying to teach him how to self advocate for himself.  Advocating as an adult is hard, you put yourself out there and exposed.  It is daunting at times but so valuable and needed.

People are not a burden.  People need a hand at times, people need help. We have a job as a fellow human being to help them.  Bethany ended the interview with saying she was sorry.  She was sorry for the pain and problems she caused.  Dr Phil had the perfect response, you don’t need to apologize there is no need.  You have a hearing impairment which lead to speech problems.  You never felt like you fit in.  You now have a burned face and still show your face and get out there.  You are brave and you have grown.  Now Bethany can read lips and says she still see’s people saying she is ugly, she is stupid, and she should have died.  Please have compassion people, this world would be so different if we can just remember no one is perfect and we are not a burden.  We all have a purpose and we are all wonderfully made.

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Working on ME

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At the end of last school year I received a card, I should say my husband received a card in the mail from his employer.  It was a program that assisted you in healthy living and changing habits and losing weight.  Chad wasn’t interested in the program but I was so I signed up and it has been great.  Everything was online, even a scale that they sent me sends everything through WIFI to track your progress.  I happened to start the program the week we moved to our new house.  So it was truly new beginnings.  I have a lot of weight to lose.  Not that extra 10-15 pounds you hear women complain about consistently.  I have told very few people I am doing this program just because of fear of failure and how much I need to lose.  I am not using shakes, surgery or supplements.  Not that these things are wrong but I wanted to try and make life long changes.

I have finally had a few people come up to me and ask if I have lost some weight.  I am a tad over 50 pounds lost.  I have a lot more to go but I am proud of the progress I have made.  I notice I have more energy and buying a couple new pieces of clothes have been fun.  I hope to keep a slow and steady pace for the future.

I have been walking more and more.  I want to add in some strength exercises so a kettle bell was just purchased.  I am excited to be able to do more and more and my kids are excited to go with me and walk with me.

A good friend of mine has reintroduced me to yoga.  I did yoga when I was in college and really enjoyed it.  A couple weeks ago we went to a yoga session in Morris.  I loved it!  I kept waiting for it to get really hard to the point I couldn’t do it but that wasn’t the case.  It was a meditation yoga and I was able to do the full class.  I would love to go back to that class once or twice a month.  Last night we went to a regular yoga class in town.  Oh my, I made it through but it was so tough.  I am not in shape.  I have about zero balance so doing these things in class I felt like I was going to die.  I finished the class, let me tell you there was more than once I wanted to get my mat and walk out the door.  One thing I really learned last night is I am not at that level.  I need beginners yoga and work up to that.  Yes I pushed myself and I got a good work out but I felt lost and extremely awkward the whole class.  In saying that I am proud I stuck with it to the end.

To add to the stress of trying something new is trying to understand what the instructor was saying.  Squaring your body with the mat and turning to watch her talk was tough.  A lot of times her back was to us while she talked or her face was down to the mat while talking.  Add in some music playing- if you are deaf/hard of hearing you get it.  You aren’t going to get anything out of what is going on.

I will try again.  I am not sure if it will be that class or a more beginner class.  I won’t give up.  I give huge virtual hugs to my friend, Beth.  She has been such an encourager.  I don’t think I would be where I am now if it wasn’t for her.  She is always giving me a compliment or a little push to do something more.  I am very thankful she is in my life.

So I will keep walking, and working.  I love cooking and canning and that works great for this because I can make my family food with no preservatives, no dyes, no added items.  I am changing my whole family without their direct knowledge.  My youngest who used to be so picky has learned to love grilled chicken that was marinated in a light italian dressing.  My oldest loves to cut all kinds of veggies for a stir fry.  My husband who was a 6 cans of soda full of sugar guy, is down to 2 cans a day and one is diet.  It is slow baby steps but they say slow and steady wins the race.

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Fall

Fall is my favorite season. I love putting on a long sleeved T shirt. That slight chill in the air. Sitting outside in the evenings with no bugs. Oh yes I am excited for the month or two that is before us. This fall is … Continue reading Fall